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Reply by Cherel33
22 Jul 2016, 10:57 AM

Dear Nouce,

Thank you for sharing.

Another arduous day for you, needing strength.

For us, what is done is never enough. We rail against what we cannot control. The path to acceptance is difficult.

I watch for the small signs as well….a little slower, a little less aware. Waking to the change in breathing, trying to settle.

I no longer know how to answer, “How’s he doing”? Few have asked, how am I.

I cherish the moments I spend in my garden. The black licorice smell of the elderberry bush, watching the pink roses and sweet peas strive to climb the trellis, listening to the light splashes of the birds bathing in the water garden and feeling the sun on my face.

Enjoy your time away celebrating your birth.

Happy Birthday! My thoughts are with you.

Cherel33


 

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Reply by KathCull_admin
14 Aug 2016, 8:05 PM

Hello
I was out doing a bit of yard work myself this morning. It is not what it used to be but continues to give me pleasure - the colours, the leaves and butterflies. Just now looking out the window, our neighbour's cat is stretched out on the grass, and so far everyone who passes stops to pet her (?him).  Something about nature and animals seems to soothe the soul.

One of my husband's favourite lines were from William Blake, "To see a world in a grain of sand and a heaven in a wild flower, hold infinity in the palm of your hand and eternity in an hour..."

How is everyone?
Katherine

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Reply by Cherel33
15 Aug 2016, 11:34 AM

Hello Katherine,

Thank you for the William Blake quote. It gives me comfort

Sitting in the garden soothes my soul and I am at peace. I contemplate my life and what the future holds watching the antics of my Jack Russell dog as he stalks the teasing squirrels.


In the house; there is no goodbye for my husband and I, there is no talk of the 40+ years of marriage. There is only talk of what he wants to accomplish in the next year, or three years or ten. My heart is breaking listening to my husband’s thoughts of huge new projects to tackle like painting the deck and having the roof replaced. He talks of riding a motorcycle again and how he misses it and how he is intending on buying another one. He sleeps more than 50% of the day, self-medicates for continual pain and is unable to walk through a grocery store. How would any of this be possible?


With Stage 4 Bladder cancer and an ECOG rating of 3 there is no cure and there will be no heroic efforts to save him.


His life is filled with depression and anger. Anger directed towards me rather than the disease. The anger hurts, but I understand his fears. I too am afraid of the future and what it holds, but I am strong and will keep putting one foot in front of another on this terrible journey.

Cherel33 

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Reply by Marymary
17 Aug 2016, 6:22 PM

Hi cherel33 - First HOW ARE YOU?  I so understand why you say that, I think some people do not ask because they don't want to hear the answer or they actually know what the answer will be with what you are going through - hope that makes sense?  But yes can totally relate to that.

Take advantage of those times in your garden, that is your solace at this time, even when dark close your eyes and imagine in your minds eye - your garden, your place.  It sounds like that is your serene place (closest word I can come up with) for you to handle or deal with what it is you are going through.  Those little moments help so much for your body, soul mind spirit to get you through the day.

AS for you hubby's anger - I can also relate to that I thought at the beginning it was because he was afraid (understandably) but as time went on (it's been since beg. of Feb/15) I understand it is more about his body, his mind.  He gets so frigin frustrated how his body is rejecting him (as he calls it), he thinks he's getting better only to have something come up to remind him it is still not healthy.  He gets mad takes it out on me mostly (sometimes) at his son, not too often mind you but it has gotten better (anger).  He hates the chemo brain (his words), his tiredness, his lack of energy after he has done too much.  

I can have the whole house spic and span and dinner jut about ready, and he will find something to bitch about, he looks  for something - I've gotten to the point of look why don't you say Thank you Mary - place looks good.  So now I leave things for him to do, why because it helps him - he needs chores (i figured out)., he has to do them and wants to do them and it makes him feels useful (I suppose) - so yes I will intentionally not clean the house spic and span, he can do vacuaaming, watering garden, etc., makes him feel....?

But yes I so relate to what you are going through and NO you can NOT take away his visions of the future, even though you know better, but just listen and SOMETIMES go along with his dream of biking or whatever it is he is looking forward to doing (so where is it you want to bike ride to first., or what color would sut the deck or house - you think).  It also takes his mind off of his own body and takes him to that same place you have in your garden.

Hope this helps a little - fear of the unknown is natural for every human being.  But as we learned in this household let's go with today, what can we do today, what needs to be done today and today is where we put our focus, the past is gone, the future is not here yet but today is a present so let's deal with today.  Today is a good day.

Some days good some not so much but today (so far) is a good day.  Take care of you, have long bath, walks etc.  sunshine / fresh air etc.

\Sending you positive thoughts - Mary 
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Reply by Cherel33
19 Aug 2016, 2:54 PM

Hi Mary,


Thanks for responding and thanks for asking how I am.


It’s nice to know I’m not alone with my thoughts. Feelings of frustration, anger and sadness continuously roil through me. Unable to share these feelings with the one person who should be by my side is challenging to say the least. Our three children, all in their 30’s are attempting to deal with similar feelings with anger leading the way. My husband spurns their attempts to be with him and participate in any type of activity. All three are now reflecting on the past and his fault in their poor relationships with him. Knowing that it wasn’t all bad, it’s heart-breaking to see and hear them struggling. I hope they will eventually come to this realization and think better of the man they knew of, as their father.


I try my best to explain and comfort them, but each is an individual with their own thoughts and feelings. The two girls have turned from anger with me, in believing I wasn’t doing enough for him, to anger with him.


It has been since the fall of 2014 for us. As the months flowed by each new illness/disease reared its ugly head. I prepared medical timelines as we met yet another new specialist. Each one believing their disease was the priority until the cancer was the new guy on the block and took precedence over everything else. Due to his comorbidities chemotherapy is not really an option.


There are so many other issues associated with this. The financial aspect alone is daunting. Where once we were comfortable, now we are struggling. Made much more difficult with the change from full employment to not and his continuous purchases. The savings are dwindling and he doesn’t grasp the situation. His denial places me in an untenable position. I am the bad guy when I’m angry with the weekly purchases arriving at the door.


You said, “I so relate to what you are going through and NO you can NOT take away his visions of the future, even though you know better, but just listen and SOMETIMES go along with his dream of biking or whatever it is he is looking forward to doing”.


You’re right in the regard that I should listen and sometimes go along with his dreams and I try desperately to. The problem is for him they are not dreams. He believes he will go walking through the bush, hunting again with purchases associated with that. He believes he will ride a motorcycle again and is researching and went to see one yesterday. I refused to go and don’t know whether he owns another motorcycle or not. There is already a defunct motorcycle in the driveway and another in the garage that I will eventually have to deal with. This is a man who can barely walk, needs help to put on his shoes and sleeps more than 50% of the day. He does little but, sleep, eat, smoke and play on his computer.


I have taken your advice and am now involving him in meal preparation such as peeling potatoes etc., anything to inspire and have success.


This is our life, he in denial and me picking up the pieces.

Cherel33 

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Reply by Marymary
19 Aug 2016, 4:59 PM

Hi Cherel - glad you took something away from my past little note., helping out makes a different to them., when you are doing something ask for their opinion., they want their normalcy back pretty much.  

I mean really WE  (not the ones going thru what they are) do not have a clue what is going through their minds, its kind of ironic we are all in the same boat (caregivers) and are supporting one another through it, in this way (forum) but yet the ones who are with the disease are NOT....their minds are so not in the place ours are and so understandably., they know their time is coming and they are NOT going to get better, they know but they are choosing to deal with it in their way, not ours.  It is their life now and who are we to say their way is  the right way or the wrong way - sorry Cherel it is NOT our choice period.  

I have to hand it to them honestly., they are looking at it as if they are going to make it through and will get better because that is the way they can cope with it.  Who are we to take that away from them., I know I can not do that - I just go with it.  If that allows him to get through the day, the week, the month - so be it.  It gives them something tangible to hold on too, to look forward to., it allows them the normalacy just like everyone else.  I personally think/feel that is what it is they want to be back to their old way, the person without cancer and just like everyone else they know., looking forward to life and whatever that brings them, just like everyone else.  Like all other people looking forward to vacations, time off, buying toys for summer, getting together with friends, family etc., people who are NOT sick go on with their life and have plans/goals something to look forward too.,  That is what he is doing., he wants to be like others at the same time he does NOT want to be this person who is unhealthy and only has a death sentence in front of him, you can't blame them for that - no way Jose.  It is a coping mechanism.

Another suggestion is maybe instead of buying a bike right now we can focus on the deck (money put to better use)., ask him to make plans (blue print) colors etc. he can focus on that and down the road we can buy you a bike for next summer. Please note, these are all just SUGGESTIONS for you please.   MAYBE just looking at things from a different perspective might be beneficial to you and him., a deck helps with the worth of house right.  

When my mom was 85 she was falling alot and my sis asked should we put her in a home and I said well first she will NOT have her view (of river and mountains) she so loved - that was her solace.  Let's get food coming in for her & help her with all else, we had cleaners coming in already but her making her own food she wanted to do but when she was falling (not balanced one bad leg) we told her we'll get food coming to delivered to her everyday (dinner) and we don't want to put her in a home but she comes first her well being and we will not put her in a home, she agreed.  I so did not want to take AWAY one of her MOST JOYFUL things in life, yes if it was too harmful we naturally would have done so but I could not take away something she so enjoys.

So maybe if you look at it from that perspective - might help a little bit., as for the purchase you can naturally sell them down the road.  Mention to him (compromise) I would much prefer before you buy another bike let's sell the ones sitting here first ok.,  for parts or what have you and you can use that money towards a new one.  List them on craigslist or what have you, then that gives him a project to do too., something to thing about.  keep him busy (occupied).

So just little things that may help you handle it all abit better.  As for your kids they are adults now and you love them of course and you can mediate but they have to deal with their relationship with their dad - their way.  The past is the past and not much you can do about that now., but deal with it (hopefully not in anger) but your love you show their dad and the love you show them is the difference.  YOU ARE BEING SUCH A GREAT EXAMPLE to them right now whether you realize it or not., honestly - you truly are.

So keep on keeping on Cherel - I think you are handling things much better than you realize, we are our own worst critics, but you are doing a good job.

Take care of you too ok -  sending you positive energies - hugs Mary
 
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Reply by Marymary
19 Aug 2016, 5:10 PM

Cherel - one more thing my sister does this - works great just ANOTHER SUGGESTION

For every NEW thing that comes into the house 2 or 3 things must leave the house (garage sale or thrift store or whatever way it is you are getting rid of., NO if's and or butts about it.  She states it works really well., I think it's a great idea.

SO another suggestion for the house that might work to your benefit.  who knows right

TTL 
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Reply by Cherel33
09 Oct 2016, 12:15 PM

Hi Everyone,
Yesterday was not a good day for me. My husband is still in the depths of denial gradually deteriorating physically and mentally. The doctors' appointments are becoming fewer and far between. There is no talk of palliative care. I wrote a poem about yesterday.

Yesterday was one of the worst days of my life.
Yesterday he wanted a motorcycle,
Yesterday he wanted to fly like the wind,
Yesterday he wanted to be free of the pain.
To see how far he has fallen is heart-wrenching.
To understand the depth of denial is beyond knowing.
To realize his glory days are behind him.
To know they can’t be again.
To crush his dreams is not what I want.
But he can’t walk,
But he can’t understand,
But he can’t see I know.
Yesterday was one of the worst days of my life.

Cherel 


 


 
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Reply by Nouce
09 Oct 2016, 6:25 PM

Dear Cherel,


No words. Just thoughts, and breathing care your direction.


Nouce


 


 


 

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Reply by Carlyn
13 Oct 2016, 3:00 AM

Beautifully expressed Nouce. 

Cherel,  I am so very sorry for everything all of you are enduring and trying to understand.

Thank you for sharing your poem. 

If it helps you in any way, confusion and delerium can be part of this process. It's very difficult to witness, wondering how to respond or if it's best  not to respond. 

You're caring for him and buffeting the emotions of all in your family it seems. I'm glad you're writing to express your feelings during this time. I wish I could think of something comforting to say. 

Take care of you. Sending thoughts of peace to you and your family.

Carlyn
 
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